My husband was diagnosed 7 years ago and has declined rapidly during that time. He is about to go on a feeding tube at night to supplement nutrition as he has serious swallowing problems. He is permanently catheterized but is somewhat bowel incontinent. He is 67 I am 56. He moves between a walker and a wheelchair. He is very difficult to understand when he speaks. I am very active and do not want to take care of him. I work fulltime and have built a fairly successful care team but I still dread coming home from work and I really resent the weekends as I have to stay with him most of the day. It is very costly to pay for all of the care as well. I try to be patient as this is not his fault but I really have no feelings of compassion or caring for him. Our sons are 22 and 24 and their feelings are similar to mine. This situation definitely negatively impacted their high school and college experiences. They do not live at home. I am pretty sure the sadness and stress are going to make me sick and I'll probably end up dying before he does!
Most blogs I read no one talks about not wanting to take care of a spouse - it is all about what a privilege it is to be a caregiver or even though it is hard work the reward is priceless - well not for me.
Soon he will not be able to be left alone at all and I just don't think I can handle it. I am considering asking him if we can start looking at care facilities.
I have never ONCE felt that I was being blessed or sanctified or even appreciated for my efforts. In fact, we are very distant from each other and essentially live as brother and sister. A LOT of that comes from the way he treated me when he was in one of his many health "crises". I am unafraid of being alone, as I am alone now, as far as any real relationship exists. As he is now about 75% deaf, we can't even talk. I yell, and he goes "WHAT?" all day and I am angry and tired of it.
I do know that there is good in what I do and have done. I believe that I am serving the Savior by serving my DH, but honestly? A lot of days it's just is so hard. I miss the man I married and I feel like he had a GREAT life....due to my taking care of 'all the things' and allowing him to be a married bachelor.
It will only get 'worse'. He can work FT but boy, do I hear about how he HAS TO keep working for 2 years and 3 months so I can have health care coverage. I feel awful some days. Thoughts of his retiring make me cry, literally.
I wish I could conjure up the feelings that what I am doing and have done are noticed and appreciated, but I'm too realistic for that. It is what it is.
"we've" planned for the future as has jfbtc---the kids have all said they will NOT take dad in to their homes, but I am more than welcome. This just makes him angrier. In reality, we have things set up for (hopefully!!!!) a good setup so that when we decline the family is NOT discomfitted.
Those of us who have had truly difficult marriage can have an exceptionally rough time being a caretaker. My husband is also a "married bachelor", and I have always done almost everything for him. Now I am ill, actually I'm handicapped) and he has dementia, and there's nobody around to do the things that need to be done, and we are having a really awful time. My heart goes out to you. At a time in my life when I need love and support, I have nothing, and I have to care for this man I have so many negative feelings about because he's my responsibility. What a life--it's so much harder than I ever anticipated.
Take things one day at a time; that's the only way to manage a situation like this.
The way you described your husbands health I would like to suggest that you contact Hospice. They will evaluate his condition and see if he can be put onto the hospice program. you should read up on Hospice and you will understand much more. They have services that will help you out. nurses that come regularly , medication coverage, cleaning people to help out, day care,
therapy, and much more.
How about family, friends people who can come and talk, sit, enjoy each others conversations. To me it sounds like he doesn't have communication with others, and that is very important.
There are so many services that you can turn to for help. Senior services that come to your home and sit with the patient, in home day care, out of home daycare. Check them out. they are there to help people in need. use the services that are available to you.
Do it, try to help yourself as so you don't fall apart .
My husband also has parkinsons, seven or eight years now. I
know exactly what you feel and what you are going thru. I am strong enough to handle the situation and enjoy my time with him. I recently had lost my dad than my mom three weeks after.
I am having trouble dealing with the loss of both parents mentally. Having lived with the and taking care of them 24/7 , I miss them so much.
Be strong and good luck with whatever you decide to do.
Where I deviate from this is in that I've told all of my adult children what my wishes are for the future. First wish being that my DW and children carry on with their own lives once I am at the point where I need MC. I also told them I'd prefer being sent at least 100 mi from where we live, so that it makes it hard for them to visit, easy for them to live for the living. We have a 12yr old daughter who has been clued in on some things now, more will be shared with her as she matures. My DW is in her early 50's, I'll be 60 this coming July. My DW is in good health and I believe will have many years to live well beyond the time that I have.
I encourage all that read this to take the time and have this discussion with your spouses and adult children, the better informed they are the less conflict there will be among themselves and all will know what dad or mom believes and wants. I think that no matter what we are faced with whether it is ALZ, Parkinson's, Cancers, we owe it to our children and spouses to let them carry on.
We have our faith and practice it , and that has given all of us peace of mind and educated about what the future is going to bring. We've been participating in a local ALZ Forgetful Friends group and that to has been valuable in helping up plan for the future. God Bless all of the Caregivers, Spouses and Patients, no matter the disease. Adult children, keep in mind and put together a plan for your own future care and discuss your wishes with your Dear Spouse. Pass on the wisdom. We can have an effect on the future.
I get you and I feel for you but I also feel for your husband as he doesn't deserve this. At this point it is best he is moved to a skilled nursing home for his best interest and yours.
Years. I was a very shallow girl with some good things inside I wasn't aware I had! To put your husband in a facility may be what you need though, so don't feel guilty because it all gets real old!
We often stay busy to avoid the situation at home. Lately, I have been getting panic attacks when heading home because I dread being there. Meditation has helped me deal with the stress and acceptance of what I am living through now. "This too shall pass", is my mantra.
As others have suggested, I greatly encourage you to make plans to move your husband to a facility. He will get the care he needs and you will begin to feel less trapped.
dating' a man who lived in another state, after a time I flew to meet him. WOW..what an eye opener, maybe it was age and experience, but he was a huge, obese man with sloppy dental care, who did a million things for me, BUT was so pompous and expectant that I KNEW if I married him I'd be trotting behind, picking up his laundry while he was out golfing all weekend, and I'd have to adapt to him completely. And I knew with his health I would also face my last 10-20 years caring for him too as he failed and I was 'everything' from butt wiper to hand holder, to watching golf TV all day. Yes I paint a dark image of a POSSIBLE, but likely future, from all the signals I go in a 3 day visit. I think I learned that some men are quite selfish, have only one viewpoint, and I was too independent , and used to a DH who liked me just fine that way. So I ended the relationship before I went further. (I also don't recommend what was so poplar 10-20 years ago-online romances..everyone ultimately is too fascinated with they 'see' and not what is real..no one-men or women- can match up to that image the other holds, for very long. some couples meet, and last a bit longer than others, but I believe you really do need to get to know someone over a few years, whether you marry or live together, before you really have the measure of them.
Also tottaly get the devout Christian comment! No judgment here. I do want to say that I sincerely respect everyone’s faith, regardless of what denomination. I also respect people who don’t believe. All people deserve to be treated with dignity. My grandmother used to say that everyone has good and bad in them. There is truth in her statement. None of us are any better than anyone else.
Having said that though, many years ago my brother joined a nondenominational church and seems to think he has a degree in theology. Actually all he has a degree in after being a member of this church is, OBNOXIOUS BEHAVIOR! Sorry if I offended anyone but self righteous behavior gets under my skin!
Instead of listening to anyone about anything, (his sons don’t bother speaking to him), all he does is preach, preach, then preach some more. His interpretation of the Bible is astonishing. He always thinks God is speaking to him. He acts crazy!
My brother has financial problems but announced to his son that God told him to buy a new truck! Just saying that not all people who have faith are rational and even twist it to be selfish and just plain crazy. Some people, like my brother use God to defend their irrational behavior. I wonder what God thinks when He looks down and sees so much foolishness. My brother actually acts like God is a slot machine or Santa Clause that will give him anything his heart desires. He ignores any passages in the Bible that speak about hardships, sacrifice or helping others.
When she dies I know I will just want to be with her but I'll be forced to carry on. So be thankful you have your own life.
You will have to have help are you will need someone to take care of you. My husband has dementia and I have had a mild stroke due to stress. Don't know where we will go from here as he gets worse. We have home health. They just check on us.
Samlil - I agree that it is time for him to move to a higher level of care so that you and your sons can live your lives the way that you choose to live them. Clearly your husband is choosing to live his life the way he wants.
I am in the journey, but it is so slow, it causes me to wonder how much more, and longer.
I am no where near what you have been through, prayers.
You said everything I need to know here about your situation:
"I am [very active] and [do not want to] take care of him. I work fulltime and have built a fairly successful care team but I still dread coming home from work and I really [resent] the weekends as I have to stay with him most [most, not all?] of the day." And everything else you said was all about you. Same with your sons. I don't know your family dynamics but it doesn't sound self-sacrificial or supportive.
From one CG to another: By all means, find him a nursing home! It may be hard for him at first but he may find relationships there that will make him feel more cared for than he does with you. I found that felt more at home and less of a burden when I spent some time in the rehab unit of a nursing home. I made some very good friends and actually felt valuable again. He doesn't like being a burden - I guarantee that!
7 yrs is a very very long time!
I was a 24/7 caregiver for 2 years and the last 6 months were rough. I was fortunate and managed to keep DH ambulatory until the last 3 days of his life.
I prayed daily for guidance and for my own sanity.
I am praying for your sanity today and that you get some kind of relief.
I don't think it's a case of not caring anymore, it's more not wanting to deal with all that needs to be done and it's overwhelming. Given he will only decline more and require more help, it's probably past the time to consider finding a good place for him. Given all the issues he has/will need going forward, he needs 24/7 specialized care. Age really has nothing to do with the situation, other than you've already given up 7 years of your "best" years and will have to give up more.
"Most blogs I read no one talks about not wanting to take care of a spouse - it is all about what a privilege it is to be a caregiver or even though it is hard work the reward is priceless - well not for me."
I've read posts/threads here that negate that. Care-giving comes in many levels and some are beyond one person's capability to handle. I knew caring for our mother in my own home was not going to happen. Between her attitude, her age and mine and her weight plus my own back issues, it would have been a nightmare (and like you, I have said many times she'll likely outlive us all!) We started with 1 hour/day aides to check on her, with the intent to increase services/time as needed (she had early dementia at that point, sort of okay, mainly short-term memory issues.) That only lasted 2-3 months and she refused to let them in. On learning the cost of MC, both brothers' initial reaction was to say for that much I'll take her in!!! I warned them this isn't like our parents and aunts taking care of our grandmother, who didn't have dementia. Not even close! Despite going this way, there are still issues to be managed, and of course I get them all! Too much of my time for the last 5 years has been sucked up, never to be regained!
"I am considering asking him if we can start looking at care facilities."
No point in asking. Start looking/explore all options, plus consult with an Elder Care attorney without discussing this with him. If he is mentally competent still, sure, at some point a real heart to heart will need to happen, but given all his needs, it would be the best for all to find a place for him.
Also, despite what some think, a facility is less expensive than hiring in-home care. Depending on how many care-givers are required and for how many days and how long/day, it can actually cost up to twice or more than a facility would cost! If someone is easy to care for, won't decline considerably and perhaps can maintain a level of need, sure, care-giving at home can be best for all, but given what you have indicated, this is NOT the case.
I suggest checking out various facilities (get their details, they all vary in cost and services provided! We went with a not-for-profit place, one that doesn't require that huge "deposit", which I still don't understand what that is needed for!) Meanwhile, find a good Elder Care attorney to consult with. Financials, POAs, medical directives (these may be tricky if he has already declined to the point where he is considered mentally incompetent), etc to have everything in place. You can even have this attorney review the details of the places you are considering, to ensure you don't get stuck in the wrong place. Also seek out any financial assistance that might be available (Medicaid, VA, etc.) A good Elder Care attorney can assist with those applications as well - we have not used Medicaid, but I understand there are many hurdles!
Lastly, no guilt. You have done what you can and have reached the breaking point. It's time to get him in a place that can provide care for him and you can return to being his spouse. Visiting can be heartbreaking when someone has declined this much and will decline more, but it will give you time and space to breathe again. It allows you to remember the good times rather than thinking how awful it is to return/be home. It frees you up to focus more on you, your job, your friends and interests, and visits not care-giving.
Be aware that you may have a rebound effect of this much like weight lifted off your shoulders that may surprise you - hubby may actually improve slightly or plateau when he is in a NH because of the quality professional daily assistance he will get that no home care can provide - good luck
My son and his wife moved in and help when they can. They work. And they have two children 2 n 5. I watch them also.
Im going through the same exact feelings and feel awful. It’s like hurry up or I’m going to die which at this point I wish I could. He is difficult he managed over 100 people and now that he’s wheel chair bound I’m the ‘100’ that gets told what to do. He doesn’t have compassion for me and all I go through. Never asks what my dr says or after my procedures if I’m ok. I cook n clean all kinds of messes. I jump up anytime he’s hungry. No schedules. Or when he needs his spit cup needs cleaning or urinal.
Live got no friends. No family of mine in this state. I miss his hugs. His sense of humor is gone. He’s demanding n loud. I haven’t had sex in 8 years. I sleep with my dog as he hasn’t slept in our bed for 3 years.
And I took care of my mom for two years with Levy Bodies disease. Til she died. Before that for a couple of years I took care of my father in law n mother in law. Bladder cancer n 5 th heart attack.
I know how you feel and I feel ashamed. Yes he has family but they are busy.
So I’ll stick it out. I’ve asked him about palliative care. He’s not interested.
Just say prayers. Thank You
Another point blank: though I know you are talking about spouse and not parent, but in case anyone pitch stones at your sons, caring for parent is way different than caring for kids, even being a single mom is easier. Because parent is always bigger than the children, parents are in position to not take no for an answer, even when they are wrong for not taking no for an answer, There are parents out there who will still smack their kids in their 60s, and the 60 year old kids cannot smack back. Parents stuck in their ways and expect the kids to cater to demand, and put them in unfair positions. Parents had the kids; not the other way around. If a parent was honestly a good enough parent to rightfully want their kids there, be willing to go to a facility selflessly, and if they check on you by phone and visits, or through video chats or monitoring if they have to live too far to visit, be grateful for that much! And if those kids got spouses or kids or both, they come first. Plus, many parents can get a babysitter for their kids, but you cannot just up and easily get or hire a sitter for an elderly.
Point blank: Women are not robots like men believe. For those, due to their belief in God, or just how they were raised, were taught to be submissive to the man, well, the man is to also love the woman like Christ loves the Church and died for it. A man is not to seek love that exalt himself on a pedestal, but a love that is humble and at the bottom of the cross, wanting to serve. It is a lot harder to be the wife than the husband. A wife still having to be a good wife when a man misuses his leadership ( not my words, I promise. I never married, and struggle with that ), so it is tougher for wife to care for husband than the other way around, especially since the woman is expected to do all like a robot with no time for herself. Point blank: I agree with another poster, and wish there was a love button to hit too many times to count! We are human, no one can be the sole caregiver. But sadly, that comes down to that! It is so easy to live your own life full time, while someone is sacrificing way more than a momma of a new born full time.
Whatever works for you, that is between you and the Lord. If people can be caregivers, them by all means. If cannot, as long as you investigate facilities and not just toss them in there, and check in on them to make sure there is neglect or mistreatment, you need time to care for you as well, or you cannot be good to anyone else. You do not want to take problems out on others when it can be avoided....
find a facility now.
I have a couple of questions, isn’t a feeding tube or perm cath time for facility? If you don’t have the money can you apply for Medicaid or do you lose your home?
My deepest wish is to go to church. But I have no one to care for him for 2 hrs. I’ve never been to this church but have had the pastor come to my house to pray over me which I just cried and felt so blessed. He visited again with two other members. And prayed over my husband n me. I cried. My husband was surprised that any would come. I have given tithings and donated clothes n household items. I’ve asked to be on prayer chain. They told me to call for anything. My husband though feels uncomfortable because they are mainly bikers. But of all the churches, even the ones I was attending never even called to see why I didn’t come anymore. ( I was an active member). I was sad. I need to get hugs and feel love and this church does it for everyone in communities. They truly care. God Bless all of them.
Anyway I know I’m rambling. This tends to happen because I have no one to talk to.
i am trying to see if he would qualify for palliative care. ( I don’t understand what it is and I can’t call anyone because he hears everything and I have no privacy except at this hour and he would get very upset.
anyway thank you and God Bless each one of you. Y’all are in my prayers everyday.
This housing is Not cheap so be prepared. $6,200+ a Month here in Nebraska. Nebraska, one of the cheapest places in the country to live.
If he is reluctant, speak to your guide at the care homes. They have dealt with this several times and have good ideas to assist you.